6 Health Literacy Challenges in Healthcare

Providers and Payers Focused on Patient Engagement Need Health Literate Partners

Ever suffered from idiopathic paroxysmal nocturnal dyspnoea?

Unless you’re a medical professional, you likely don’t know the answer. Healthcare has its own language that is indecipherable to most people. Yet, most people require healthcare and need to understand what their symptoms mean, how to take prescribed treatments, and how they contribute—positively or negatively—to their health outcomes.

The issue is health literacy, a person’s capacity to obtain, process, and understand basic health information to make appropriate decisions about their health.

The American Academy of Family Physicians (AAFP) says, “More than one-third of U.S. adults, an estimated 80 million persons, have limited health literacy, making it more difficult for them to read, understand, and apply health information (e.g., wording on medication bottles, food labels, appointment slips, discharge instructions, informed consent documents, medical forms, insurance applications, medical bills, and health education materials).”

The nonprofit ProLiteracy identifies the basic skills that enable patients to apply the major components of health literacy:

  • print literacy – writing and reading
  • oral literacy – listening and speaking
  • numeracy – using and understanding numbers, such as medication doses, calculating premiums, copays, and deductibles

Numerous studies have determined that there is a correlation between low literacy and the overall self-care and health decline of patients.

The lack of health literacy, especially in certain populations, will be a major hurdle in healthcare’s drive to increase patient engagement in the management of their care. The way forward is for healthcare as an industry to reckon with and make accommodations to address these six health literacy challenges.


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1. Literacy is Fundamental to Healthcare

The multiple entities involved in the health care system demand that patients handle an increasingly complex path to self-care, care coordination, and system navigation.

Why is literacy necessary to access health care?

At nearly every step of a patient’s interaction with the healthcare system, literacy or health literacy is necessary:

  • To register online for health insurance
  • To find providers or healthcare facilities
  • To follow written directions to the doctor’s office
  • To complete complex health questionnaires
  • To understand the HIPAA forms they are being asked to sign
  • To explain their medical history to the provider
  • To understand terms used by health providers
  • To understand how risky behaviors impact health
  • To comply with directions on prescription medicines
  • To schedule follow-up care or visits

Some patients encountering such challenging literacy scenarios may also be struggling to overcome low education levels, a limited proficiency in English, or cultural barriers to health care. These limitations can be exacerbated by another of the health literacy challenges: poor communication between patient and provider.

2. Assumptions and Shame Get in the Way

Communications with patients, by providers and payers, in person or via any channel, must adapt to the reality that while U.S. adults on average read at an eighth-grade level, more than 75% of patient education materials are written at a high school or college reading level, according to AAFP.

AAFP reports that “physicians, including family physicians, are often incorrect in their assessment of whether patients understand patient education materials.” This mis-assessment may be due to physician assumptions about the patient’s understanding of common medical terms such as stool or screening.

“Physicians need to provide patients with information that is simple and clear to help them understand their medical condition and its treatment. Many physicians rely on written material they send home with their patients to reinforce or explain further the information discussed during the visit.” Most medical information is written at a grade level higher than most patients understand.

There is a corresponding and compounding issue on the patient’s side of the equation. Many patients with reading problems are ashamed and hide their inability to read. A paper in the National Library of Medicine reports that almost 40% of patients with low functional literacy admitted shame about their trouble in reading. Of those, 67.2% had never told their spouses, 53.4% had never told their children, and 19% had never told anyone.

The health risks due to assumptions on the part of physicians, and shame on the part of the patients, are prevalent in certain populations.

Health Literacy Challenges


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3. Low Literacy in the Underserved Impacts Cost

Those impacted by poor health literacy are often those already underserved as healthcare patients. AAFP reports that limited literacy exceeds 50% in many segments of the population. The Health Resources and Services Administration, part of HHS, identifies four groups that suffer from low health literacy:

  • Older adults
  • Minority populations
  • Those who have low socioeconomic status
  • Medically underserved people

The Center for Health Care Strategies reports that there is a disproportionate number of lower-income Americans with low health literacy who are eligible for Medicaid. Individuals with low health literacy experience greater health care use and costs compared to those with proficient health literacy. Through all its impacts—medical errors, increased illness and disability, loss of wages, and compromised public health—low health literacy is estimated to cost the U.S. economy up to $236 billion every year.

Low health literacy is also an impediment to preventative care, resulting in higher use of emergency medical services. Patients with low health literacy are 2.3 times more likely to visit the emergency room, according to literacy nonprofit, per ProLiteracy.org.

In The Association of Health Literacy With Preventable Emergency Department Visits: A Cross-sectional Study, published in Academic Emergency Medicine, researchers assessed the association between health literacy and emergency department (ED) admissions. It was determined that education is a critical factor in reducing hospital admissions and health care costs; that 9.5 percent of ED visits were potentially preventable, and 61 percent resulted in a hospital admission.

Financial costs are just the beginning of the health literacy challenges.

4. Lack of Health Literacy can be Deadly

AAFP reports that numerous studies with varying methodological strengths have shown that deficiencies in health literacy contribute to poor health outcomes; higher mortality rates and worse overall health status.

ProLiteracy concurs: Lower health literacy has been associated with a higher prevalence of depressive symptoms, physical limitations, and chronic diseases; specifically heart disease, diabetes, stroke, and asthma:

“Given the complex nature of managing chronic diseases and age related health decline, low-literate individuals who fall into these categories, especially low literate older adults, are at a much higher risk of death.”

A study led at the Denver Health Medical Center to determine the association between low health literacy and mortality and hospitalization of patients with heart failure concluded that nearly one in five patients with heart failure have low health literacy.

The Agency for Healthcare Research and Quality says, “When healthcare consumers are unable to find, understand, and use information to inform decisions about their care, the consequences can be dire. A patient who misunderstands how to take medicines for heart disease may require a hospitalization that was otherwise avoidable. Or a patient who takes the wrong insulin dose and experiences a drop in blood sugar may fall and experience a serious head injury.”

5. Patient Engagement Depends on Health Literacy

Patients participating as active partners in their own healthcare is the future of the industry. In an article, The Future of Patient Engagement in the Digital Age at Harvard Medical School, the case for patient engagement and participation as crucial to next-gen healthcare is clear:

“Studies suggest that well-informed patients, educated about their condition, and involved in their health care decisions not only have greater satisfaction of care, but also tend to have better outcomes and lower cost. … Patients who are active participants in their own health care have fewer unplanned re-admissions, medical errors, and delays in care. These patients also report having greater confidence in the health care system.”

This bright future is entirely dependent health literacy to come true. Patients are just as eager to play a more active role in their own care. Per blog Health Engagement HIT:

  • 89% of senior patients (age 55 and older) surveyed said they want to manage their own healthcare and will need health technology access to do so.
  • 35% said their health plans do not adequately use health technology to make healthcare easier.
  • 76% want more information about how to improve their own health.
  • 60% said they need this information in more understandable, everyday language.

Again, health literacy challenges are an impediment to the level of engagement that patients, providers, and payers all want. Health Affairs reports that disengaged patients are 3x as likely to have unmet medical needs and 2x as likely to delay medical care.


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6. Healthcare Communications Fail Low Literacy Patients

A longstanding joke about physicians is that their handwriting is illegible. But impenetrable healthcare communications, whether in language or design, are no joke. AAFP finds that:

  • Patients with limited literacy are distracted by, and spend more time looking at, irrelevant or unnecessary information before they find pertinent information in written materials.
  • Even highly literate patients prefer simple, easy-to-read handouts.
  • Most patients only retain two to four key points from a handout.

One study of patients with low literacy skills demonstrated a lower rate of correct interpretation of prescription drug warning labels than those with higher literacy skills. It was identified that the most common causes of misinterpretation were:

  • multiple-step instructions
  • reading level of the text
  • use of icons
  • use of color
  • message clarity

Health.gov studied the impact of webpage design on comprehension among low health literacy readers. “Users with limited literacy skills have more problems with short-term and working memory than users with higher literacy skills. They may struggle to decode challenging words and remember their meanings. If a webpage has a large amount of content, users may not be able to remember it all. Furthermore, what they do remember may not be the most important information.”

This study used eye tracking technology to assess how low literacy users interacted with a webpage of health information:

Health Literacy Challenge

Challenges in Health Literacy

Health Literacy

Providers and payers considering how to adapt communications to improve comprehension among low health literacy patients and members should include all channels, from print to mobile to web in their plans to address health literacy challenges.

ProLiteracy says, “The quality of communication between the patient and provider, and materials that are easy to understand, such as forms, prescription labels, and health care instructions, is key. These factors can help increase patient engagement, improve adherence of medicine and care plans, reduce hospital admissions, and ultimately, decrease low literacy related deaths.”


The good news is that the health care industry is making strides in addressing these health literacy challenges. The Agency for Healthcare Research and Quality cites research studies that show good health literacy practices can improve specific health behaviors and outcomes for patients:

  • Colon Cancer Screening: This study shows how teaching clinicians to communicate more effectively can increase participation in colon cancer screening.
  • Depression Management: This study shows that, when low-literate patients with depression were referred to literacy programs, their symptoms significantly improved compared to control participants, who just received depression treatment.
  • Diabetes and Heart Failure Management: These studies show that, when patients receive self-management education using effective communication techniques, diabetes and heart failure control are improved.

Other research shows that patient education efforts can help increase the occurrence of shared decision-making. One tool from the University of California San Francisco (UCSF), called PREPARE For Your Care, explained complicated health concepts in plain language. This increased the frequency of shared decision-making by 35 percent.

Providers, payers, and anyone who creates communications for healthcare can refer to recommendations from the Health Literacy Universal Precautions Toolkit from the Agency for Healthcare Research and Quality:

  • Identify patients with limited literacy levels
  • Use simple language, short sentences and define technical terms
  • Supplement instruction with appropriate materials (videos, models, pictures, etc.)
  • Ask patients to explain your instructions (teach back method) or demonstrate the procedure
  • Ask questions that begin with “how” and “what,” rather than closed-ended yes/no questions
  • Organize information so that the most important points stand out and repeat this information
  • Reflect the age, cultural, ethnic and racial diversity of patients
  • For Limited English Proficiency (LEP) patients, provide information in their primary language
  • Improve the physical environment by using lots of universal symbols
  • Offer assistance with completing forms

And, by the way? Idiopathic paroxysmal nocturnal dyspnoea is an unexplained attack of shortness of breath and coughing in the night. Now you know.